“Huntington’s Disease Scars"

 

 

            Huntington’s disease ravishes the human brain like no other disease. Like fingerprints, this inherited disorder presents differently for each patient. For Mom, we overlooked her earliest symptoms—apathy and anxiety. She loved spending part of her days cross-stitching intricate patterns. Anyone who’s ever sat with needle and thread knows the delicacy of this work. When she set aside an unfinished piece, she told me that she wanted to try a different craft. I purchased a few possibilities from our local Michael’s store, but nothing drew her interest. Around the same time, she stopped reading. Always one book in hand and several on her nightstand, she shifted to barely reading the newspaper. She frequently complained that my dad never took her any place, but whenever he made suggestions, she tearfully nixed his ideas. Anxiety, something many people battle, became part of her daily routine. Sometimes when I called her, she’d cry. My suggestions that she talk to her doctor got the same response, “It’s just a blue day. It always goes away.”        

            When Mom’s feet began dancing during car drives and her fists clenched wadded Kleenex, she’d answer my worried questions with assurances that Dad’s driving drove her crazy. She spent tons of energy controlling her movements when in social situations. Dad finally found a project she loved—land outside of Leakey, Texas. They spent most of their 60s with plans and trips that filled their days. Mom’s anxiety drifted away, but her clenched fists and restless legs appeared whenever she was stressed or tired. I realize now how easy it was for all of us to minimize her early symptoms.

            Right after Dad’s 71^st birthday, a massive heart attack killed him. Within a year, Mom found an apartment walking distance to our home and signed a six month lease to see if San Antonio would fit her needs better. Over a period of eight years, her abilities melted away so slowly that we missed the changes. Once driving on her own, she began handing the car keys to one of us. Her weekly walk to our house became less frequent and then stopped altogether. Her anxiety kicked up again, and she began obsessive behaviors to counter her worst fear—her retirement deposits not being credited to her account. I discovered that she stayed up until midnight to begin calling her bank until her money arrived each and every month. I never could convince her that it was fine to wait until later in the morning.

            None of us noticed that Mom cooked fewer meals for herself. Somehow, I began swinging by her place daily on the way home from work to bring her over for meals we cooked together. When her leg began buckling out from under her, tumbling her to the ground, we scheduled a doctor’s appointment. Fortunately, she had it happen while with the doctor, who scheduled Mom with a neurologist. He suggested several possibilities, and when we mentioned my cousin had Friedreich’s ataxia, he wanted to order genetic tests. Before that could happen, Mom suffered a TIA, landed at Brooke Army Medical Center and her Huntington’s disease went into hyper drive. All of her subtle symptoms blossomed and others surfaced. Her balance evaporated, she couldn’t hold a cup of water or walk unaided. A young lieutenant’s experience with an entire family battling Huntington’s disease insisted to her superior that Mom be tested for it as soon as possible. The neurologist at first resisted the idea because Mom’s cognitive abilities were so sharp. She always recited the “remember these words” drill flawlessly, knew the date, all of our names and birthdates, counted forward and backward without fail.

            The tests, though, never lie. Mom’s Huntington’s disease snuck into our lives without notice and took over everything during her final four years. The stages are recognizable and yet still unique for each patient. Our lives narrowed down, too, as caregivers. I raced to retire from teaching because we knew she’d need care twenty-four/seven. We removed the wall between one bedroom and the bathroom to create a wheelchair wide access point. We structured our days and nights to accommodate her ever increasing needs. When Mom moved into our home, she could get into and out of her wheelchair on her own. She could cook with me, help with laundry, and take trips to see my siblings. She would discuss the news, watch movies with me, and chat about plot lines. By the end, we did everything for her.

            Caregivers don’t talk about having to handle impacted bowels. Caregivers don’t share the horrors of watching a loved one go from eating meals to being unable to take a syringe of water. Caregivers don’t reveal the heartache whispering, “It’s time to go. We’ll be fine. We love you, but you need to let go.”

 

            Mom died in November 2012 after living with us for two years, but we were her caregivers for many years before she moved in with us. Huntington’s disease changed our family forever. We have a resilience now that prepares us to handle new crisis situations with a comparison point—“It’s NOT as bad as Huntington’s disease.”

Copyright 2025 Elizabeth Abrams Chapman